Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, May 16, 2013

I mocked the controversy created by the New York Post story about Disney Land. In case you missed it Wednesday Martin has alleged that wealthy Manhattan parents have hired people with a disability with the express purpose of eliminating waiting on line. The fact this story has prompted an extended amount of coverage bothers me. First, we are talking about the NY Post, a tabloid owned by Ruppert Murdock. Not exactly a paragon of journalism. But let's put this aside. Who is outraged? In my estimation people that know nothing about disability. The headlines are about what I expected:

I thought this story would have a short shelf life. Now I am not so sure. CNN picked up the story and as expected all Florida based news outlets are discussing it. The fact is this is not news at all. People have been using this scam at Disneyand elsewhere for a long time. Thus this is a new twist on an old story with the perfect villain: uber wealthy Manhattanites. Damn those 1% parents and their children too!

When I read stories about disability scams I shrug. The outrage expressed puzzles me. I have had my civil rights violated in a myriad of ways. For instance, I have been refused entry to restaurants in New York City; no wheelchairs I am told. I have had many a taxi pass me by to pick up a bipedal customer. I have had bus drivers lie to me and say the lift is not working or that they do not know how to use it. I have had rental companies assure me a car with hand controls is available only to find out the car is "lost" in transit. When such incidents take place non disabled people look away. I cannot recall anyone ever coming to my defense when I suffered gross inequities at let's say an airport. I cannot recall a single person that expressed outrage when I was being denigrated by someone who clearly held power. Hence, I shrug about Disney and the angst expressed. It is misplaced emotion. I wonder where are these people when the school board decides not to put a lift on a bus? Where are these people when the special education budget is cut? Where are these people when Mayor Bloomberg selected an inaccessible taxi of tomorrow? Where are these people when technology for people with a vision impairment is deemed too costly? Where are these people when a new facility is constructed but does not meet ADA requirements? Where are these people? Nowhere to be found and silent. This is bad, a terrible social dynamic. What people say and what people actually do is radically different. This is a giant social problem. Who is too blame? Me and everyone reading these words. This social failure reminds me of the classic film Cool Hand Luke. The brutal guard looks at Luke behind aviator sun glasses, hat pulled down low and states: "What we have here is a failure to communicate".

In addition to a stunning level of ignorance about disability in general, I have an additional concern. As noted in my previous post about the Disney is the emergence of able bodied outrage. Here I refer to a multitude of stories that question what I would classify as a reasonable accommodation for people with a disability. The most well known story about what a treat it is to have a disability pertains to airport security lines. More often than not, people with a disability do not wait on line. We are shuttled off to a different and shorter line. This is a reasonable accommodation and mitigates a multitude of different disabilities. People see this and think oh man you are so lucky. Well I do not feel lucky when I am the very first person on the plane and the very last person off the plane. I do not feel lucky when my wheelchair comes back from the belly of the plane and is damaged. I do not feel lucky when a supposedly trained person asks me to "walk just a little bit". This too is a reasonable accommodation one I find decidedly unreasonable

At issue for me is how do we raise the level of understanding. How do we get all people to think disability rights and civil rights are one in the same? Disability studies has been ineffectual. The disability rights movement has stagnated in recent years. ADAPT demonstrations are utterly ignored by the press. So how do we educate and make the bipedal masses see disability for what it really is? I have no clue. And that is problem number one.

Tuesday, May 14, 2013

I love to read the New York Post. It is the epitome of tabloid journalism. The NY Post has no redeeming value aside from funny headlines and good coverage of my favorite hockey team, the NY Rangers. I am very careful not to read the news or what passes for the news. Today I was amused to read an "exclusive" article, "Rich Manhattan Moms Hire Handicapped Tour Guides so Kids Can Cut Lines at Disney World, by Tara Palmeri. The article is so dreadful and meaningless I refuse to provide a link. Just use your imagination--that is good enough for NY Post journalists. The article prompted my good friend friend Stephen Kuusisto to write a post on his wonderfully imaginative blog Planet of the Blind. Gawker, Jezebel and the Gothamist "reported" about the NY Post story. Better yet, Wednesday Martin, a social anthropologist discovered the scheme. Martin has a new book out, Primates of Park Avenue, and works as a writer. She has a PhD in comparative literature from Yale University. How this makes her an anthropologist I am not so sure. But we are dealing with the NY Post, facts are optional. What I loved about this story is the effort to make it sound as though a lurid under ground economy exists. I am here to tell you yes we crippled men and women cheat. We steal. We manipulate. We are, in short, human beings. Oh, the horror!

The NY Post story had me on the floor laughing when I read about "black-market Disney guides" and the existence of a "rogue guide service". But wait there is more--yes, this service is available to only to "Manhattan's private School set". The inside information is passed around in a "ritualistic manner". You cannot make this shit up. Investigative journalism in the world of Ruppert Murdock. We are doomed! Now I could get ornery like my friend Steve Kuusisto did, (http://www.planet-of-the-blind.com/), and with good reason. Like Steve, I too am upset what he calls "able bodied outrage" over the myriad of perks we people with a disability supposedly enjoy. But not me, no sir, I am not mad, angry, or upset. I see an opportunity. The real question for me is do I want to react as a heartless capitalistic pig or as an outraged person with a disability. A third options exists too--have the Society for Disability Studies investigate the matter. The SDS meetings are going to be held--you guessed it--in Disney Land. Sorry, but I cannot help but keep on laughing. Let me explore the possibilities.

First, heartless capitalistic pig option. Dream Tours, identified as the "black marketers" charge $130 an hour and charge $1,040 for an eight hour day. I will undercut Dream Tours. I will put on my pathetic cripple costume and look particularly needy. But wait there is more! I will charge a flat fee of $1,000 and include free sun screen. But wait there is, you guessed it, even more. I will provide PBJ sandwiches and juice boxes. For medical emergencies we can use Disney's readily available epipen for bee stings. Bees love those juice boxes kiddies. Nothing but the best for tawny well heeled parents from Manhattan. Sorry, Nobu is a bit out of my realm of experience. Just think how hungry you will be after eating nothing but a soggy PBJ like your maid made when you were little.

Second, outraged cripple approach. This is not a money maker. Think of this as an Americanized Survivor episode minus the exotic location. I get to travel with the Manhattan family to Florida. We can wait and hope an Access A Ride bus shows up to take us all to JFK. Sorry no limos for the crippled. I fear NPR would broadcast yet another story about how disability is in reality a total scam. Upon arrival we hope the elevator works. A big if but today we are lucky. We get to wait in line to hand off our luggage to friendly airport workers. Of course, none will speak with me because I have the cripple plague. After waiting in line for over an hour we make our way to the gate. The agent is of course is thrilled to see a crippled family member. We can observe the delighted gate agent spend 10 minutes entering obscure codes into the computer and inform us we will "pre-board". Needless to say this will not go well. The trained professionals that arrive late are disinterested, have no clue what they are doing, and do not speak a word of English. Overlooking these mere inconveniences, we board and then get to watch every single person exit the plane upon arrival and wait and wait and wait and wait... Um, and wait for similarly well trained employees to get off the plane. Of course this assumes my wheelchair was not damaged because the crew insisted it be stored in the belly of the plane. Somehow my privileged crippled status and multiple perks r.e. airport travel will not go over well.

Three, an investigation performed by the SDS. Oh God save me. First, we will need to organize a committee. The committee will create a panel discussion. 19,000 emails will exchanged by interested parties and posted on every listsev known to humankind. One year later the committee will reconvene to discuss the panels findings. The results are not conclusive. Another panel will be formed, papers presented and 29,000 emails exchanged. A new president of the SDS will take over and declare the approach used to date was ableist from a Foucaultian perspective. Yet another panel will be formed. More papers delivered, 39,000 emails will be exchanged. A report will be issued five years later. It is a wonderful report. By God, it is a publishable quality report that puts a dagger in the heart of social and economic inequality. Temple University Press is thrilled. The acquisition editor is thrilled. The report is edited by all parties involved and sent out for scholarly review. Two years later the reviews come back. This is important work. Editing is needed but we are good to go. The revisions take two years, warp speed in academia, and nearly a decade later the SDS weighs in. Disney should consider the symbolic significance of creating a line for people who have atypical bodies. This questionable policy could cause people unfamiliar with disability culture to resent the presence of the other. The SDS implores Disney to reconsider their approach to difference. Perhaps a committee could be formed.